Louise Bourgeois, PREGNANT WOMAN, 2008; Gouache and colored pencil on paper; 30 ¾ x 21” Photo: © The Easton Foundation / VAGA at Artists Rights Society (ARS), NY
The first stranger who noticed I was pregnant isn’t exactly a stranger. “You got No. 2 in there?” a woman who works at the grocery store my family frequents said, nodding toward the place where my overalls strained. At home, my son was in the middle of learning how to use the potty, and I’d consumed so much related media that at first I thought she was talking about — well. I thought she was talking about something else.
She sputtered before I could respond, her face red with the horror reserved for falsely accusing a woman of pregnancy. It was instinctual to make my voice reassuring, to lay a cheerful hand on my belly in the classic pose of a woman with child. If I didn’t like this person so much, if she didn’t insist my toddler say please and thank you every time she offers him one of the lollipops they keep by the register, I might have left the encounter indignant and smarting.
When I started trying to have a second child, I wanted to know everything I could before I told most people anything at all. That meant giving things over to medical professionals and genetic-testing companies, and it meant an already complex reproductive history grew more so. It meant that I didn’t necessarily want to explain that the lump in my overalls was a decision I was still in the process of making.
I guess the first to know our reproductive plans was my son’s doctor, at an appointment when he was still an infant. The exam room was crowded; me, my husband, my father-in-law, a pulmonologist we’d just met, our genetically imperfect baby. “Now, like I was saying earlier, ” the doctor started to say, “we need to discuss the prospect of more children.”
Before he could go on, my father-in-law — in a supreme act of kindness — faked a phone call and fled into the hallway. The doctor continued once the door closed behind him: “You could do IVF. Or, you could get pregnant naturally, and have an abortion, if you need one.” IVF, we said. That was what we planned to do, eventually. This wasn’t the first time we’d heard how the procedure could be used for couples with genetic problems. It was just the first time someone outside our marriage had directly addressed the issue.
Pregnant with my son three-and-a-half years ago, I felt in possession of a terrifyingly wonderful secret. The pregnancy was mine; it was my deep and frameless desire, and I was only familiar with the blankest of reasons to be afraid. I was nauseous enough that a few people besides my husband knew early on, and like so many women who believe this until they don’t, I said I was pregnant with the implication that I would have a baby. That turned out to be true: My pregnancy was uneventful, my son’s birth was fine. But despite our request to know in my first trimester, we did not find out we’re capable of causing cystic fibrosis — which manifests mostly in the lungs, requires intensive daily treatments, and hacks your life expectancy about in half — until the son we’d just had was diagnosed with it.
As we learned too late, my husband and I have genetic mutations that, when combined, cause disease. This means there’s a one-in-two chance of us having a baby who’s a healthy carrier, like we are, and a one-in-four chance of a baby with neither of our mutations. The other one-in-four chance is what happened the first time I was pregnant. The other one-in-four chance is my son.
We knew the process of IVF would take a long time. When we started last year, our son wasn’t even 2, and none of what we were starting to do felt quite real. I searched “best IVF doctor” for the city where we’d just moved, and I found a clinic with views of the water, and a waiting room featuring large, oblong sculptures that it took me months to realize were eggs.
There, we explained our history to nurses, to doctors, to genetic counselors, and to some of the previous who were in training. We handed over what we knew about our genetic makeup, about the mutations we carry on chromosome seven (mine is common and bad, my husband’s is less common and a little less bad). We discussed mutation classes and my follicles and my uterus and my age. There were the numbers and the medical terms and the strange fact that what it all meant was the recurring desire to have a baby.
What I had not realized is that we had to make our private wishes known to not only these near strangers, but to some of our closest relatives. “Are both your parents living?” a genetic counselor asked. I told her yes; my husband had to say no, that his father had died the spring before. “Four parents would be ideal,” the counselor said, pursing her lips. “But three will do.” She explained what was required to test embryos for the exact genetic mutations that cause our son’s disease, how we we would need to send off swabs of DNA from our living parents, ourselves, and our son to track the way our genes behaved over the generations to end up here, at our sick child. This would allow a genetic-testing company to make a “probe” to suss out which embryos were affected, and which were not. This was all assuming that the first part of IVF resulted in embryos that qualified for preimplantation genetic testing.
I think most fertility patients experience the upside-down pyramid. You sit across from a doctor or genetic counselor while she explains the process of what you’re setting out to do, putting anything you already know about human reproduction into practice. I had age and a good track record with pregnancy on my side, the counselor said brightly. What did she tell women who don’t, I wondered — was it what she didn’t say to me? At least you don’t have genetic problems.
Beginning at the top of a piece of paper, she drew ovals to represent how many eggs might be retrieved after my ovaries had been stimulated by fertility medications. These eggs would be combined with my husband’s sperm and on the next, smaller level, some of those eggs would fertilize and form embryos. And some of those would make up the next-smallest level, the embryos that make it to blastocyst. Those of good quality would be biopsied, the samples sent off to the genetic-testing company. That final part of the pyramid — the estimate for healthy embryos, not healthy children — was a tip so narrow and sharp that she might as well have reached across the desk and stabbed me with it.
Our parents were gracious and kind, when we explained why they would be receiving DNA kits in the mail. They did not ask too many questions or express more than a polite excitement. I was grateful, but then again, I suppose it’s pretty obvious that informing your in-laws is not how anyone wants to begin the process of making a baby.
DNA in hand, the genetic-testing company got to work. The weeks tumbled by. At times, both of us wavered in the desire to make any changes to our family. Our son seemed to go from baby to toddler overnight; he sang full songs and gave rangy, mysterious accounts of his days at preschool. He taught himself to do somersaults and told us that it was “a small creature,” maybe a rat, who’d snuck into the kitchen and eaten the tips off all the strawberries.
But he also started asking me to turn off his vest — the device that shakes his torso to loosen the dangerous mucus in his lungs — before his time was up. He realized how easy it is to tear the nebulizer mask off your face if you don’t feel like having a harsh saline solution sprayed down your throat. The spoonfuls of medication-spiked peanut butter, which he’d once swallowed without comment, began to offend him. We wondered whether there was an element of cruelty to knowingly having one healthy child, one not. We worried having another child would affect our ability — financially, emotionally, physically — to care for the one we already had.
And still, I wanted it. I wanted my son to have a sibling. The desire was shapeless and borne out of half-sensations and blood instincts. Like a fog, it spread over sharp realities like bank accounts and hours in a day, obscuring anything in its path.
But IVF doesn’t care about the pull in your chest, the nameless thing barreling you toward a child-in-theory. IVF is all bank accounts and hours in a day. It’s schedules with all-caps items and aggressive highlights. It’s long bills and longer phone calls with insurance providers, if you’re lucky enough to have any sort of coverage.
The genetic-testing company completed our probe. We scheduled an egg retrieval, almost canceled it, then kept it. I watched YouTube videos to learn how to give myself shots. The fixed numbers and the clinicalness, the shiny patient portal and hyperawareness of test results: It was all so different from how my first pregnancy began and was carried out. No emotion could enter here, I thought, like an idiot.
The morning of my egg retrieval, I told the anesthesiologist that actually, I had been pregnant before, that my son was 2 years old. I was awake, then I was not, then I was half-awake, and someone told me how many eggs they’d retrieved.
“Did you think there would be more?” a nurse said softly, a few minutes later. “Is that why you’re crying?” She patted my hand. “It’s not that bad, really.” I shook my head into the pillow and mumbled something about a one-in-four chance and carriers and how I didn’t want to transfer any. In a follow-up phone call, my doctor paused when I repeated that. After a beat she said most of her patients were fine with it.
More weeks went by. The test results came back, and we were lucky: There was one chromosomally normal embryo without CF, without either genetic mutation. When I asked, my doctor thought we should go ahead and transfer it. Why do another retrieval, she said, before we knew this one wouldn’t end in a pregnancy?
We scheduled the transfer. I canceled it a week later, over email. We scheduled another one, and this time, we stuck to it. I learned how to read at-home ovulation tests that communicate in faces, but not before calling the clinic prematurely about what turned out to be the wrong smiley face. The week of the Kavanaugh hearings, I decided there was no way the fertility acupuncturist assigned to me could be a man. The acupuncturists associated with my fertility clinic assured me it would be fine, and I assured them it would not be fine with me. The day of the transfer, a woman stuck needles all over my body and then left the darkened exam room, instructing me to relax. I stared at the ceiling, an uneasy porcupine, and tried to ignore the yoga music she’d left on.
The doctor doing the transfer — a man, after all that — didn’t seem to appreciate the atmosphere any more than I did. “Sorry,” he said, gesturing at the acupuncturist’s equipment when he came in. “It’s getting a bit full in here. Your embryo’s waiting in the hallway.” The procedure was quick; I was awake, and I don’t remember at all what it felt like. I do remember that afterward, someone gave me an image of the embryo. The acupuncturist caught me staring at it when she came back in.
“That’s a beautiful photo,” she said, smiling knowingly, and I wanted to kick her teeth in. I had a child at home; if, when, this didn’t work, I would be fine. Besides, preimplantation genetic testing isn’t perfect. If this embryo’s results were discovered to be inaccurate later on, I knew I’d terminate. Here’s a particularly cruel aspect of cystic fibrosis: Those affected by the disease pose a health risk to each other, through the significant dangers of cross-infection. As children, siblings with CF should have their own rooms and do their treatments separately. Adults should stay a minimum of six feet away from each other.
Nothing could be alluring enough, I wanted her pitying smile to know. Especially not some gray blob.
Committed to performing indifference, I shrugged when she asked if I wanted her to take the image off my torso — where it lay when she pinned my hands with needles and instructed me not to move — and place it on the chair. The image stayed put, and I hated her, and everything, even more during that next stretch alone in the dark.
I went to the clinic for blood tests. The next month, there was a heartbeat. I left the clinic with congratulations and a swag bag, which contained a nest of green tissue-paper, a book on pregnancy, a zip drive of embryo images I’ve yet to open, and a onesie with the clinic’s logo blazing across the narrow chest.
I was sicker, my second first trimester. When I was pregnant with my son, I felt as though I were at the steering wheel of a ship crossing choppy waters. This time, I felt like I’d fallen overboard with a rope tied around my waist, the weeks and the hormones dragging my body across the rocky ocean floor.
Just as that sickness began to fade, I started on a series of tests I didn’t have the opportunity to have during my first pregnancy. The first was a chorionic villus sampling, or CVS, an invasive test somewhat similar to an amniocentesis. One or the other is recommended for patients who’ve had the kind of preimplantation genetic testing I had; both can detect a number of chromosomal abnormalities and genetic disorders, including cystic fibrosis.
A friend who knew asked me to go for a run with her. Like a suburban mom with an agenda and a minivan, she described her experience with the procedure while we were both moving, our eyes on the road ahead instead of each other. “The needle is like a foot long. Don’t be surprised,” she told me, saying that truly, it hadn’t hurt. “But what I really wasn’t expecting was the part where the doctor moves it around, then plunges it up and down a bunch of times.”
Belly-up on the table a few weeks later, I didn’t have the words to describe how grateful I felt to have been prepared. I couldn’t seem to stop crying either, and I hated that my face was so exposed. The nurse by my head, her voice was too kind. The doctor with the needle was too attentive, even as she stirred me like a cauldron full of glue. Nothing was like how it had been before, when I was pregnant with my son, and knowing that felt impossible. I felt guilty no one had taken such care with that pregnancy, and I felt guilty for that thought, too, because it erased the person I love most. Afterward, a different nurse helped me to a chair in a patch of sunlight, covered me with a blanket, and fed me crackers and juice, as though I’d just been through something far worse.
By then, I had told more people I was pregnant, but not nearly as many as when I was pregnant with my son. While we waited for the results to come back, I scheduled a fetal echocardiogram, I arranged for an anatomy scan, and I waddled through the days, visibly pregnant.
The test results from the CVS came back on a Friday, but I didn’t notice I had a voicemail until Monday, the day before I turned 34. The sample showed no evidence of cystic fibrosis, no mutation from me, no mutation from my husband. The genetic counselor was hopeful the other test result would come back soon.
Normally, a chromosomal microarray is ordered for patients with pressing questions. It’s for children who have anomalies or developmental delays that don’t fit into a known syndrome, or for pregnant women with scans that are alarming for reasons not readily apparent. That wasn’t me, but that didn’t mean I couldn’t pay thousands of dollars out of pocket to have a lab look closer at the placental cells sampled during the CVS I’d already had. “Look” isn’t even quite the right word — a microarray is a chip that maps a DNA sample, which is then compared to a reference sample. This way, tiny additions or deletions are highlighted by the differences between the two.
The genetic counselor told me matter-of-factly that about one percent of the time, a microarray shows a variant that will cause a known problem. But about 1.7 percent of the time, the test discovers what’s called a variant of unknown significance, meaning that the tiny addition or deletion of genetic material could be nothing. Or something.
At first, I wanted the test. We were extremely lucky we could even consider it, financially. But after a few days, I was less sure. Then I felt absolutely sure and knew I should have it. Or should I?
If the results fell into that 1.7 percent, I’d never know exactly what the subsequent abortion had prevented. But if a problem were discovered once a baby was born, I would know I’d turned down the chance to do something — a chance I hadn’t had before. I wobbled, I talked to friends, I explained all this to my husband. He opened his mouth to say something, then shut it before anything came out.
After I asked for the microarray but before the test results came back, The New York Times Magazine published a story about the ways geneticists are using ancient DNA to study ancient human behavior. Old skulls have been opened up, the DNA inside extracted in an attempt to answer the broad, bold question of, as writer Gideon Lewis-Kraus puts it: What Happened?
Right before the results finally came back, I realized that my DNA question seemed much smaller, but was just as momentous. There is nothing I believe in more than taking reproductive responsibility, than not turning away from the information available, when that information has the potential to turn into a talkative 2-year-old who doesn’t understand why he can’t just play with his train set when he gets home from preschool. The best I can, I’m asking a question with the goal of absorbing pain and suffering before it can be transferred to someone else. What Might Happen? As much as anyone, I realize that the answers could come in ways that defy prediction, in the amount of time it takes cancer cells to form or a car to smash a bike. But for now, there are some specific questions and answers, and they are both contained inside me.
So much of this pregnancy, I’ve felt like a mini fridge on legs — inviting a bunch of strangers to rummage around and get back to me about what they find. There are people who are very opposed to an examined pregnancy like mine. There are doctors who don’t want women to worry, and there are women who don’t want to spend their pregnancies worrying. And it’s not untrue that the vast majority of babies are born healthy. But what are we more worried about: a pregnant woman’s months-long worries? Or the lifelong toll on the actual person she could create?
I live on the other side of a pregnancy that went unexamined. My family’s life is full of examination now, with worry and fears and restrictions that alternate between the foreground and the background of our days. We are bound to tests and their results, to hospital hallways and our doctors and nurses, to drug companies that promise miracles and have happily accepted us into their “community” for an annual fee of more than $300,000. My son is the recipient of incredible medical science, but I wish I’d been the one science got to first. That it had been me, acting as his mother by giving up the role.
It’s almost funny: Women and mothers are so often belittled and dismissed and reminded of how little power we hold in society and government. But those who perpetuate this attitude might have an increasingly difficult time ignoring the staggering amount of power a woman wields, especially if we can hold onto and — crucially — expand our access to medical care and technology. Every pregnant woman who terminates after a certain test result, who knowingly gives birth to a child who will be sick, who continues a pregnancy only under certain conditions: Every one of us exerts a profound influence on the future. It’s not hard to understand why some people take such issue with us being able exercise the most complex and significant power there is.
What happened? My first pregnancy continued without my informed consent. I have a beautiful son. My second pregnancy felt like it belonged to so many others — the doctors and genetic companies and test results — before it belonged to me. But handing it over to be examined, now that I’ve done it and am left alone to decide what’s next, is the most powerful I’ve ever felt. What might happen? I don’t know, exactly. But I have an idea about some of it, and this time, a choice. I’m due in June.